Navigating the Twists and Turns of My Lymphoma Diagnosis

Diagnosing cancer can be a long and unforgiving journey, and for me, it was lengthier than most. I had a three-month adventure that took me winding through a Candyland map of different diagnoses, and I didn’t even get to stop at Ice Cream Floats.

By the time I was done, I had anaplastic large cell lymphoma. But the course I took was anything but straight.

How it all started

It all started for me when I woke up in the middle of the night with a burning in my belly. It felt like I’d eaten too many atomic fireballs and washed it down with drain cleaner. I was pretty well convinced I had an ulcer, so I ate a bunch of Tums and went back to sleep. That worked for about a year, but then things just got too painful to continue.

So I made an appointment with a local GI doctor. She scheduled an endoscopy for a month later. I never made it. A few days before I was scheduled for the “stick a camera down your throat” procedure, everything went to Hell in a handbasket.

Going to the emergency department

Sitting in my tv room, fighting the pain of my “ulcer,” I suddenly began to throw up. Oatmeal, rice, water, air – it didn’t matter.  After two days of that, I knew there was something serious going on, so it was off to the old ED again. I’m a frequent flyer there, so I had my punch card ready.  One more emergent situation and I got a free EKG.

So, long story short, I was down a couple quarts of blood due to internal bleeding. So they topped me up and admitted me with an endoscopy to follow the next day.

The sun rose that next morning, and they took me down to the endoscopy suite at 5:30am. For some unknown reason, they do the procedures very early in the morning, which sucked because I was finally getting the first sleep I had in a month. They put me under and stuck that camera allllll the way down. Unfortunately, all the way wasn’t very far because it was blocked by my swollen duodenum – the tube that connects the stomach to the intestine.

All my diagnoses

My first misdiagnosis: a bleeding ulcer

Because of the observed condition of my bowel, it was assumed I simply had a bleeding ulcer due to years of NSAID use. It meant a week in the hospital with little to no food, and a repeat of the procedure that weekend.

So, that’s exactly what happened. Although my bowel was only a little less swollen, they let me go home to recuperate. It didn’t take. I was back in the ED two days later with uncontrollable vomiting and an uncontrollable opposite end.

My second diagnosis

Since the ulcer wasn’t getting any better and they didn’t have much of an idea why, I was sent for about five CT scans. After the fifth one I was starting to “meow,” and someone asked me about a family history of cancer and tumors. Not being an idiot, I immediately asked why they suddenly were so interested if my uncle Giuseppe had a carcinoma when he came through Ellis Island. I got the answer we all dread: “well, we see a shadow on the cat scan, a mass.”

Dun, dun, dun! A mass. It’s 2018, we all know a mass means a tumor, and that’s exactly what they thought it was – a GIST tumor. A GIST is a type of unspecified benign mass that grows in someone’s abdomen, and I certainly got it. The gist, that is.  Not wanting to stay in a hospital which didn’t specialize in cancer, I transferred into Manhattan that night.

My third diagnosis

Once I got into the new hospital, they ran all the tests again. They said that because there was a growth (now not necessarily a GIST) holding open my bile duct and possibly eating my pancreas, I’d have to undergo what’s called the Whipple Procedure.  What’s the Whipple Procedure? It’s actually an extremely complicated surgery where they rearrange your indoor plumbing so that it connects like the green pipes in Super Mario Brothers. In other words, sh*t still gets where it’s going but it takes a shortcut.

I was whisked up into the super luxurious VIP surgery floor, right next to where the Kardashians stay when they get medical procedures. I imagine.

Waiting and waiting for answers

My rheumatologist, who is a brilliant doctor and an amazing person thought “hmmmm, does Daniel have a weird GIST tumor that doesn’t really have a cause, or does he have one of the two possible cancers that arise from RA and RA meds?”

RA can cause lymphoma and adenocarcinoma and since I have RA, he thought it might be worth a check. So, they took me down for another endoscopy. By now, I had submitted to so many that they were considering installing a hatch in my bellybutton. This time, though, they were going to bring home a souvenir and grab a piece of the tumor for all the world (and pathology) to see.

So they did, and then we waited. And waited. And waited some more. We didn’t mind so much, the waiting, until they kicked us out of the Kardashian wing and put us in the local tv weatherman wing. Then we complained that it was taking weeks to get a confirmed diagnosis. Finally, after three months of total hospital time, we had our answer. Probably.

Finally receiving a true diagnosis of lymphoma

When the doctors came in to tell us they were going to treat me for lymphoma, they seemed happier than I feel they should have been, considering the news. In fact, they said, “Good news! It’s lymphoma.”  And I said “Good? You must have a crap life.”

Anyway, notice I said treat me for and not “tell me I had.” That’s because they were only 90% sure I had lymphoma because pathology still wasn’t finished testing. I’m not sure what the Hell goes on down in that lab, but whatever it is they move slower than the guy at the McDonalds drive-thru when you’re running late.

Still, they decided a 9/10 shot was better than not waiting to start chemo. So they juiced me up that night, and the rest, as they say, is history.

Don't worry until you know

So, as you can see, getting cancer diagnosed may not take as long as my own weird board game trip through four and a half diagnoses did. But it’s no picnic – for anyone. It takes time, and during that time people worry and fret and worry some more.

So, if you know someone who is being tested, try to do your best to comfort them and keep them calm. In the meantime, don't play the cancer diagnosis home game and guess at something you can't possibly know.  The truth will come out eventually and you will have more than enough time to worry.